Some time ago, Brooke’s older sister, Katie and I came to an agreement about what I would write about her here. If I don’t have the chance to ask her permission first, I am to trust my gut about what would embarrass her and what wouldn’t and, obviously, not write anything that I don’t think she would want me to share. My gut answer comes from one question … “If it were me, and I were [thirteen], would I want my mom telling this story to everyone I know?” The answer is, most often, no.

Brooke’s autism does not negate her right to me asking the exact same question of myself every time I sit down to write about her. My desire to talk about my challenges, my fears, my own insecurities about the process, cannot ever trump her right to privacy. Helping to guide others cannot come at the cost of her dignity.

If she chooses someday to talk about any or all of it, so be it, but she’s not in a position to make an informed decision yet. So it’s up to me to ask the question, “If it were me, and I were [eleven], would I want my mom telling this story to everyone I know?”

The answer, my friends, is no.

Since writing that post, I’ve remained silent on the topic. Unless Brooke tells me one day that she’s comfortable talking about it, that will not change. You will not hear the specifics of her experience from me. That story simply is not, and will never be, mine to tell.

But there’s something that I do need to say about the topic in general. Something that isn’t about her. Something that has been eating away at me for months.

–

I try hard not to lecture here. I’m a mom, just like many, if not most, of you reading this. I have no expertise that you don’t have, no degrees or schooling or letters after my name that give me any more credibility than anyone else.

But …

Once in a very rare while, there’s something that I know with such certainty that I feel compelled to drag out my soapbox and shout it to the sky. This is one of those times. So please indulge me. I know this. I promise.

Talk to your kids about puberty.

Yes, I’m talking to you. You, who think they can’t possibly get it. Please don’t stop reading. This isn’t for People Who Aren’t You. This is for You.

Whether your children are verbal or nonspeaking, appear to understand words or don’t. Whether they are in a mainstream classroom with little support or are in a one to one program and not yet toileting independently at ten.

I’m asking you to talk to them.

All that writing I do about presuming competence? Well, this is what it means.

It means trusting that they are hearing you. That on some level, your words are sinking in, to be processed when the tools are available, when the time is right. It means believing that they are taking in far more than they may be able to affirm for you in real time. It means trusting that they will, at some point and on some level, understand.

In January, I wrote the following. It might not seem entirely relevant. I promise, it is.

Last night, as I wrote about why it’s so important to me to talk to Brooke about her autism, I also began to understand just what it means to me to Presume Competence, something that we hear a lot about but don’t always stop to define.You see, Brooke doesn’t yet *seem* to really grasp what autism is or what it means that she is autistic.

Our “conversations” on the topic are still 99.9% one-sided and if she really understands them, she’s not yet able to communicate that to me. To me, presuming competence doesn’t mean assuming that she gets it. In fact, I think that would be a mistake. Here’s what it does mean to me …

I believe that I am presuming competence by continuing to start the conversations and by continuing to look for ways to help her understand them. I believe I am presuming competence by continuing to tell her that autism must be a pretty cool thing because it’s part of her and she’s one of the coolest people I know. I believe I am presuming competence by telling her that, as challenging as autism can be for her, it is also the source of some pretty nifty gifts. I believe I am presuming competence by continuing to tell her that she is connected to others and by telling (and showing) her how much I respect those people to whom she is connected.

But, again, it doesn’t mean assuming that she understands all of this right now.What I am assuming is that she’s taking it all in, absorbing it, holding onto it in her steel trap of a brain until the time comes when she’s amassed all the tools that she needs to peel back the stored layers and extract her truth. I’m presuming that even if she’s not yet ready to connect all the dots now, she *is* capable of learning, growing, evolving, tool-collecting and ultimately layer-peeling – in her time and in her way.

That, to me, is what presuming competence is about.

Brooke consistently astounds me with what she remembers from long before I thought we had the ability to understand one another. Do you remember the story about the Christmas of 2010? The one I had the audacity to call “In so many ways, Brooke’s First Christmas,” just because it was the first time that she’d participated in the festivities in a way that I, with my rigid, inflexible, neurotypical perception, recognized as participation. God, I hated that story. The way that I gloated over her “finally getting it.” Until I was the one who finally got it.

I’ve been over the moon that my girl is GETTING it, I wrote.

That she’s been a true participant in the process, in the traditions; in Christmas. It’s a whole new world for us.

But the other night there was a hint at something. Something big. Something that knocked me on the head and reminded me that I have been looking at my girl through MY lens. And forgetting to look at the world through HERS. And that if I had been looking through hers, I wouldn’t have been able to forget that there’s always, ALWAYS, a whole lot more than what I THINK I see.

Come closer, my friends. This is important.

We were in the basement, hauling up the last of the Christmas decorations. I was covered in red and green as I tried to make the most of my two arms in an attempt to minimize trips. I walked slowly toward the steps – a wreath slung across one shoulder and a stack of table linens on the other. Both hands were full – one with the kitchen Santa, the other with his cookie baking wife, Mrs Claus. A basket of silk ribbon was precariously balanced in the crook of my left arm.

Brooke stood in front of the shelves, holding another Santa by his hat. “C’mon, baby,” I yelled back. “Let’s make a trip up. You carry your Santa.”

The wreath was beginning to dig into my shoulder. “What tree, honey?” I asked.

“My tree,” she said. “That goes in my room. With Zoe on it. And Big Bird. And Elmo. But NO Cookie Monster. Mom, where’s my tree?”

Years ago, I bought the girls their own little tabletop trees. While Katie set about decorating hers, Brooke (I thought) barely took notice of hers. Katie took her time choosing garland and tinsel, then took great care in picking exactly the right ornaments. For weeks on end we wandered through the aisles of ANY store that sold decorations. She was determined to find just the right ones.

Brooke simply didn’t seem to care. I showed her ornament after ornament trying to solicit an opinion – or at least a reaction – but none was forthcoming. Finally, I stopped asking and chose them for her. I found adorable beaded garland and strung it around the colored lights. I searched high and low for ornaments that I thought she’d like to look at. I found Sesame Street and Dora, even Blue’s Clues. And when it was finished, I put it into her room, just like her big sister’s.

–

I carefully laid the wreath on the floor. I set the ribbons down along with Mr and Mrs Claus. I walked over to my girl and pointed to where her tree was sitting on the shelf, hidden behind two others. “Do you want to bring your tree upstairs, Brooke?” I asked.

“I do,” she said.

She walked next to me as I carried the small tree up two flights of stairs. She chose a spot for it and together, we set it down in her room, on her dresser, right where it had always been. And right where she’d known it belonged.

Later that night we lit her tree before bed. As we snuggled together in the warm glow of the lights, it hit me.

Brooke knew all along. She GOT it all along. For the millionth time, I was the one who didn’t get it at all.

How many stories like this one do we all have? The Aha moments when we see, in some way, shape or form that our kids were THERE when we thought they weren’t. (Psst, they’re ALWAYS there.) ENGAGED when we, so sure of our own perceptions, thought that they weren’t taking it in, whatever it was. In how many ways have our kids, time and again, proven us wrong?

So when you dismiss the idea that your kid could possibly take in and in some way process information about puberty, well, think again. It may not be as simple as reading What’s Happening To Me? or sitting down to chat about the Birds and the Bees. But there is a way. Some way. And finding it matters.

Kids, by definition, don’t have an awful lot of control of their worlds. Kids with challenges communicating tend to have even less. Kids without any reliable form of communication have almost none.

There is nothing more disconcerting, terrifying even, than your body changing without warning. Than hormones toying with your moods and jarring your emotional world without explanation. Than hair growing where it wasn’t before and parts of your body suddenly smelling that aren’t supposed to smell. Than urges to do things that make no sense, penises suddenly having lives of their own and, for the love 0f God, bleeding from your vagina without knowing why.

These things, without context and without explanation, are confusing and terrifying. Put them all together and it’s not really unreasonable to think you might be dying.

So talk to your kids about puberty.

If you don’t think they’ll understand words, draw pictures (or find them – there are tons of resources online). If you don’t think they’ll look at the pictures, find videos (if you can’t find them elsewhere, check your public library). If you’re concerned about short attention spans or low tolerance for a lot of words, read half a page of a book to them every night at bedtime until you get through at least the highlights. Once it becomes an expected routine, you might just be able to read the whole book, even if it’s half a page — or one paragraph — at a time.

I’m not promising this is easy. You may have to do some work to make it accessible. You will definitely have to get over any of your own discomfort. It is what it is, guys. Don’t let your squeamishness or insecurity stop you from doing it. It matters too much.

Get creative. Use favorite cartoon characters. Use familiar scripts, favorite movies, favorite books. Revamp Potty Training books. Find a way to do it. Talk to your kids’ teachers and aides and school nurses. Brainstorm ways to give them the information that they need.

You see, this isn’t something that will wait until our kids are “developmentally” ready to handle it. When their bodies are ready, they will have to “handle” it one way or another. They deserve to know what the hell is happening to them.

.

Above, I’d written, “Brooke’s autism does not negate her right to me asking the exact same question of myself every time I sit down to write about her. My desire to talk about my challenges, my fears, my own insecurities about the process, cannot ever trump her right to privacy. Helping to guide others cannot come at the cost of her dignity.”

.

Neither does her autism negate her right to know what’s happening to her body and why. In fact, in some ways, it makes it even more important for her to understand. And, easy or not, it’s my job to figure out how to make that happen.

.

.

Ed note: To reiterate, I will not answer any questions that compromise Brooke’s privacy. Please don’t ask.

.

.

Ed other note: If you have resources that you’ve found helpful, please leave them in the comments below so that others may benefit from them. Thank you!

.

.

Share this:

Like this:

Related

17 thoughts on “autism, puberty and respect – part two”

I forget the name of the show (if I’m lucky I might be able to remember in a few days), but there was a cartoon I used to watch as a kid that talked a bit about puberty every now and again – a character’s older brother had his voice start changing in one episode, and in another episode a character got her period rather early (at 10), that sort of stuff. It was geared more at kids ages 6-8 and in retrospect, I really appreciate those episodes for giving a bit of a warning about what’s going on.

If you don’t mind the outrageous late-80s/early-90s fashion, consider also checking out relevant episodes of Degrassi Jr High and Degrassi High. Both have comically terrible acting and are extremely low-budget, but they dealt with a lot of serious issues that kids were dealing with and at the time it was very controversial (some of the episodes are very dated, but most stand the test of time as far as their material goes). The earlier seasons of the remake were pretty good, too. I haven’t watched the later ones so I’m not sure about those.

Another thing: If your kid does not get sex ed in school (they should be getting it but they might not if they’re in special ed – the special ed kids in my school were taken off to the resource room during sex ed because the teachers didn’t feel it “appropriate” for them to be in the classroom, which is kind of ridiculous IMO – let’s take the most vulnerable kids in the class and keep them ignorant of their bodies and rights because that makes sense – but there you go), I’d strongly urge people to make sure they get it at home. Effective sex ed is the single most effective way of preventing teen pregnancy and STIs. Yes, I’m sure the more socially conservatively-minded would love to teach abstinence only but the fact is that it doesn’t work, either to prevent STIs or to prevent pregnancy, or even to lower sexual activity rates (kids in abstinence only programs have about 50% more sexual partners than those in comprehensive programs). Furthermore, abstinence only programs tend to spreads inaccurate information so that your kid will have a hard time knowing truth from fiction. Comprehensive sex ed, by contrast, will talk about abstinence, but will also talk about things like birth control and STIs, and has been proven to reduce rates of pregnancy and STIs. Contrary to what detractors say, education about sex does not make kids go out and have sex. It enables them to make informed decisions about whether or not they want to take on the risk, and more of them opt not to when they have all the information and when sex isn’t made into some mysterious forbidden thing.

Excellent blog post Jess. The following is a fantastic book. It’s called “Taking care of Myself” by Mary Wrobel it is “a healthy hygiene, puberty and personal curriculum for young people with autism.it is written almost in social story format for many areas. Basic black and white pictures. It goes from hygiene of blowing your nose, using the bathroom, bathing etc to health such as going to doctors, eating healthy etc, modesty, and there are both male and female development sections. It covers menstruation, however I have never read all of that bc I have boys….it also covers touching and personal safety. I highly recommend it

We started our daughter off with American Girl All about me. It expains everything that a little girl goes through and has pictures. We used to sit and go through it and discuss it a little at a time to give her time to absorb the information.

The American Girl All About Me has been wonderful…even if my girl declares, “That’s not going to happen to me.” This post is so important. Many children need to know ‘what’s next’ in their daily lives. My girl is no exception. I am very open with her about puberty. I have to look at it through a literal perspective. And hell, don’t we all wish it wouldn’t happen to us? Great post!

just a thought. KEEP talking about it even when you think they already “get it”. because there are so many more levels of “getting it’ than we will ever realize. My son has always been a reader. He loves to read, and from very early he spent his time reading books many WAY above what should have been his level. When he was in preschool his uncle (my bil) was in medical school. He brought him home a human anatomy book that he knew he would enjoy. Especially because it was almost life size (to a toddler) at 3 feet tall. Some of it was printed with pictures in layers on clear pages that allowed you to Peel back the layers to see each “system” of the body in its detail, but looked like a complete body when all together. he loved that feature. The reproductive systems were of course included in this book. He started WAY back then asking questions. I answered them in the way he would understand best… with the pure facts. But i never really had a discussion with him about it because “discussions” are not really his thing. By the time he was in 5th grade and they were going to be doing the “body changes” class, he already knew ALL the facts they would cover in class and more. I allowed him to go to the class and did not expect there to be an issue….with his understanding or otherwise. but there was a HUGE issue.

During the class he answered questions and offered information and participated quite well. Everything seemed fine. Then the class was wrapping up and they were passing out a booklet for them to bring home to parents that would help them continue the discussion with their kids. He flipped. They could not figure out what went wrong or what could have triggered this. He seemed fine just seconds before. He had one of his biggest meltdown ever. The only time to this day that he has been aggressive toward someone other than himself. He ended up eloping from the building. it was scary for him, for me and for everyone involved. (They found him under the high school football field bleachers after only a minute, so he was OK.) Even though he intellectually was able to process ALL of the information he was not emotionally ready to know it was actually going to happen to him and he thought that if he finished the class it would happen NOW!.

There are so many layers to “getting it”. We now have frequent talks on the subject. He is 13 and far from through it just yet. Humor, and not taking yourself too seriously helps. Especially for having this conversation with boys.

I wanted to recommend the following, that my friend found. Its aimed at 10 or 11 year olds but we have used it in book and DVD form for 5and 6 year olds. Its VERY matter of fact but it also uses fairly diverse and inclusive images, so if that’s an aspect you want …

Considering the fact that I have entirely NT friends whose parents never talked to them about puberty and who consequently thought they were literally dying (like hemorrhaging internally) when they got their first period…Oh my god, yes.
And let’s just say that as a very verbal kid with an ex-reproductive-health educator for a mother, I was pretty well covered. Really, really well covered actually.
I mean, like, it also depends on the kid, but most autistic kids have some form of media they enjoy (either on their own, or through being read to, etc.). And I think the most important thing, as you’ve said, is just making sure that puberty and sexual health and so forth are represented in that medium. Just like, other basic parts of life, like eating and drinking and sleeping and so on.

We’ve used “The Boy’s Guide to Growing Up” by Terri Couwenhoven. I believe there’s a girl’s version as well. It’s written at a grade three level for kids with disabilities. It’s very clear, with great pictures. Mind you, I don’t know how much T has taken in, but at least he’s willing to wear deodorant now. (for which we’re all thankful!)